The National Hemophilia Foundation (NHF) announced plans for a NHF State of the Science Research Summit to bring together the inherited bleeding disorders community for a virtual conference to identify and accelerate research progress in the areas of greatest need for affected individuals and their families. The event is scheduled to be held virtually September 12-15, 2021.
“We’ve made tremendous progress as a community in recent years, but we are acutely aware of the health disparities and gaps in access that persist in the treatment of inheritable bleeding disorders, particularly among women and those with ultra-rare bleeding disorders,” said Leonard Valentino, MD, NHF’s president and chief executive officer and State of the Science co-chair. “Based on extensive input from across the community about the most urgent and pressing needs, we are taking the lead to align the community on specific priorities that can dramatically improve care for the future.”
Working on collaboration with the American Thrombosis and Hemostasis Network (ATHN) and other community organizations, NHF conducted a series of focus groups, listening sessions and surveys to collect input from community members including patients and caregivers, researchers and allied healthcare professionals, chapter and member organizations, and industry partners. With this input, NHF has convened a steering committee and working groups representing diverse disciplines of health professionals as well as patient representatives to identify common themes and opportunities reflecting the community’s input.
In September, the groups will come together to discuss recommendations for priority research areas, which will be delineated in a National Research Blueprint for Inherited Bleeding Disorders to be published in early 2022.
“Our goal is to establish a clear understanding of the most pressing issues challenging our community today and the areas of greatest opportunity for research,” said Michael Recht, MD, PhD, chief science officer at ATHN and State of the Science Co-Chair. “If we can align around these priorities and encourage more collaborative efforts, we are confident we can make a real impact and transform care.”
“This is an exciting opportunity for us to come together as a community and accelerate our progress. We’re looking forward to welcoming our esteemed community of researchers, hematologists and clinicians to lead robust discussions during the Summit. We encourage the entire community to participate and share your perspectives,” added Dr. Valentino.
The community is invited to join NHF and its partners for the Summit, which will feature interactive panel discussions and opportunities for comments and questions. More information on the Summit, including registration details, will be posted soon to the events page at hemophilia.org.